Pagoto and human development and family sciences<\/a> professor Keith Bellizzi, along with four students from the high school, undergrad, and graduate levels, recently published, \u201cA Content Analysis of #Childhoodcancer Chatter on X,\u201d<\/a> in the Journal of Adolescent and Young Adult Oncology.<\/p>\n They found that \u201ceducational\u201d tweets and ones that discussed \u201cscience\u201d accounted for a combined 28.1% of posts about childhood cancer. Next came \u201cfundraising\u201d with 21.2% of tweets \u2013 Twitter did not become X until mid-2023, after the study. \u201cAdvocacy\u201d was most prominent in 20.2% of tweets, and \u201cmotivational\u201d posts comprised 17.5%.<\/p>\n \u201cCancer disrupts lives, bringing uncertainty and hardship to individuals and their families,\u201d Bellizzi says. \u201cThese findings highlight how different stakeholders may reclaim a sense of control in a situation that often feels uncontrollable. By turning to social media, they are not just sharing stories, they are actively shaping the conversation, raising funds, spreading awareness, and building a supportive community.\u201d<\/p>\n The study says a total of 3,217 tweets were captured from that three-month period in late 2022 by searching on the hashtag, so researchers pared down the total and randomly selected 1,000 to review. They came from 454 unique accounts.<\/p>\n We can study all these different sources of data, but social media gives us a unique form of data by showing us how patients, caregivers, and health care professionals talk about health in their natural environment. — Professor Sherry Pagoto<\/cite><\/p>\n<\/blockquote><\/span><\/p>\n Among those accounts, researchers found that family members of children with cancer accounted for most of the content on childhood cancer, making up 41.5% of the tweets that were reviewed. Nonprofit organizations were next at 38.6%, followed by health professionals at 8.7%, academic and\/or medical centers at 4.2%, and for-profit companies at 3.5%.<\/p>\n \u201cWe can study human behavior in a lot of ways,\u201d Pagoto says. \u201cWe can do surveys. We can do focus groups. We can take blood samples. We can study all these different sources of data, but social media gives us a unique form of data by showing us how patients, caregivers, and health care professionals talk about health in their natural environment.\u201d<\/p>\n Cameron Cordaway \u201923 (CLAS), who majored in physiology and neurobiology and worked on the study her last year at UConn, says she wasn\u2019t surprised to find individuals sharing their stories, sometimes in great detail, on social media.<\/p>\n After all, sharing experiences with others in a digital way is second nature for her generation, she says.<\/p>\n \u201cWhen I got into dental school, the first thing I did was text my whole family and post it on social media,\u201d Cordaway says of her acceptance to the University of Pennsylvania School of Dental Medicine, where she\u2019ll begin studies this fall. \u201cFor my generation, our whole lives are on social media. It\u2019s second nature when something happens in your life to tell people on your phone in some way.\u201d<\/p>\n She continues, \u201cSomething as heavy as a cancer diagnosis, while it might not be the first thing you would post in public, people definitely would use social media to communicate, inform, and educate about it. It\u2019s also a good way to let people know, \u2018Hey, this is what\u2019s going on with me. This is why I haven\u2019t reached out or why I haven\u2019t been as present.\u2019\u201d<\/p>\n Pagoto says she and Bellizzi conceived the project after noticing that a father chronicling his young son\u2019s cancer journey on Twitter had become a trending topic on the site.<\/p>\n \u201cIt really enraptured Twitter users for months, as people watched from afar as this father shared his family\u2019s journey through his child\u2019s cancer treatment,\u201d Pagoto says, explaining that got her thinking about how social media was being used among those thinking about, dealing with, and focused on childhood cancer.<\/p>\n She and Bellizzi turned to digital natives like Cordaway, Cindy Pan \u201924 MPH, clinical psychology grad student Jessica Foy, and Andie Napolitano \u201928 (CAHNR) who was a high school junior when she worked on the project.<\/p>\n Napolitano, who was a student at Amity Regional High School in Woodbridge, says the school offers a science research program that allows young teens in their sophomore year to start working with university-based researchers.<\/p>\n That year she worked with a professor from the University of New Haven, she says. The last two years of high school, though, were spent with Pagoto and Bellizzi.<\/p>\n She says she liked the idea of a research project dealing with social media and wanted to use the experience to test drive UConn as a potential for her undergraduate work. A bonus was that like the other students, she could be part of the project from start to finish.<\/p>\n Pagoto notes that many research studies take many years to complete, thus students see only a small piece during the year or two they\u2019re on board.<\/p>\n Since tweets are in the public domain and searching Twitter back then was easy, data collection was almost effortless, and the four students could quickly get to work analyzing the tweets.<\/p>\n That\u2019s the fun stuff, they say.<\/p>\n \u201cI have an interest in social media research because people spend so much time on it and so many think it\u2019s a bad thing and that only misinformation spreads online,\u201d Napolitano says.<\/p>\n Doing a project that looks at its benefits especially appealed to her.<\/p>\n Pagato says that in addition to X, Facebook, Instagram, and TikTok also get heavy use from people using the platforms to talk about their other physical issues and even mental health problems.<\/p>\n \u201cThere are influencers with Tourette syndrome, depression, cancer, and any condition you can imagine, and, yes, while there is misinformation on social media, there\u2019s also community on social media and these influencers are sharing their experiences and garnering support,\u201d she explains.<\/p>\n \u201cIt\u2019s a little like, \u2018Here\u2019s my experience. I have this diagnosis, and this is what my life is like,\u2019\u201d she continues. \u201cHealth influencers on social media destigmatize many disorders that have been hiding in the shadows, particularly mental health disorders.\u201d<\/p>\n Those with similar diagnoses, she says, can learn from others about what to expect, how to cope with side effects, how to find clinical trials, and what questions to ask.<\/p>\n \u201cPatients have a lot to say about their experience. They\u2019re the ones who must live with the disease. Their voices matter. I wonder if that\u2019s what draws them to social media \u2013 to be heard. Oftentimes, we\u2019ll hear in studies that patients don\u2019t feel heard by their doctors. They may not even feel heard by their family members,\u201d Pagoto says.<\/p>\n Napolitano agrees.<\/p>\n \u201cIn today\u2019s mainstream media environment, for a lot of reasons, stories don\u2019t get heard. Social media is a way for people to make themselves be heard,\u201d she says.<\/p>\n And that includes the mother of a son treated for neuroblastoma in 1999 who posted four hours ago in a conversation about bringing a newborn into a crowded airport that she had to protect her young son from viral exposures the first eight years of his life: \u201cThis is what having a child w\/ #childhoodcancer or a #survivor with vulnerable health is like.\u201d<\/p>\n","protected":false},"excerpt":{"rendered":" Family members of children with cancer accounted for most of the content, making up 41.5% of the tweets that were reviewed<\/p>\n","protected":false},"author":160,"featured_media":226654,"comment_status":"closed","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"wds_primary_category":0,"wds_primary_series":0,"wds_primary_attribution":0,"footnotes":""},"categories":[2296,2224,2226,2460,2269,2076,2235],"tags":[],"magazine-issues":[],"coauthors":[2368],"class_list":["post-226587","post","type-post","status-publish","format-standard","has-post-thumbnail","hentry","category-allied-health-sciences","category-cahnr","category-clas","category-faculty","category-inchip","category-research","category-today-homepage"],"pp_statuses_selecting_workflow":false,"pp_workflow_action":"current","pp_status_selection":"publish","acf":[],"publishpress_future_action":{"enabled":false,"date":"2026-06-17 01:53:33","action":"change-status","newStatus":"draft","terms":[],"taxonomy":"category","extraData":[]},"publishpress_future_workflow_manual_trigger":{"enabledWorkflows":[]},"_links":{"self":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/226587","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/users\/160"}],"replies":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/comments?post=226587"}],"version-history":[{"count":11,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/226587\/revisions"}],"predecessor-version":[{"id":226986,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/posts\/226587\/revisions\/226986"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media\/226654"}],"wp:attachment":[{"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/media?parent=226587"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/categories?post=226587"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/tags?post=226587"},{"taxonomy":"magazine-issue","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/magazine-issues?post=226587"},{"taxonomy":"author","embeddable":true,"href":"https:\/\/today.uconn.edu\/wp-rest\/wp\/v2\/coauthors?post=226587"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}\n
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